Sewing, drawing, thinking and writing about life with Ehler's Danlos Syndrome

Category Archives: Not everyone is a rocket surgeon

I will have logged something like 50 hours by around 9:30 tonight, when I will be done seeing the show that opens tomorrow for the fourth–and not final–time this week. It’s not that it is the worst show ever or anything (I am looking at you, West Highland Way), but I think the only thing I watch more than four or five times is Firefly. I am exceptionally tired, and tonight’s viewing is an extra. Normally I don’t attend the preview performance, which is a sort of dress rehearsal with an audience, but we are apparently trying this idea of talk backs in conjunction with preview and our director (you may remember the Retarded Child Emperor) wants me to attend. I find this amusing, and hope that at some point his blood suddenly runs cold when he realizes that he has now taken the risk that I will mention, in public, to an audience, that he fired me from the creative team during the production process.

Imagining revenge keeps me alive, it does.

Prior to coming home, I went with a work study to pull from our stock for the show I am designing this semester, Frankenstein. Stock, for us, is like a nearly 2000 square foot closet full of amazing clothes, hats, accessories and more. It’s a candy store for kids like me, and it’s all, sort of, MINE. It’s also gotten increasingly hard. Five years ago I was a gazelle leaping among racks and boxes, climbing stepladders and hauling things about. Shoving clothes to the side to look at a suit, hefting several items at once up and down, carrying boxes and armloads with no worries. Now, everything I hoist is a choice that is painful and tiring then, and painful and tiring later, too. I keep a 20 year old stationed nearby, but let’s face it, I can’t stick my arms into theirs and make them move through it the way I want. I can have her carry everything I’ve chosen to my car, but I’m the one who spots the right suit and pulls it off the rack to measure it and put it on the rack of things I wish to use.

My shoulders, wrists and ankles will wish to converse with me about this activity for hours tonight. It’s something I used to love doing–the thrill of the chase, looking at amazing pieces of clothing, re-acquainting myself with favorites that we own and that we’ve built. Now it’s an endurance test, and an exercise in helplessness. All of that would probably be okay, if I were home for good now, instead of planning dinner and waiting to go to the show. It might even be okay if I were going to the show, but not going tomorrow, for opening night. But, right now, I hold two tickets to a sold out show, and I always go to opening night.

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In other news, I had the last visit with the Shrink on Monday. It was suitably awkward. At the end I stood up to go and she followed me as she does and then she asked if we might hug, which we did, and then I inwardly berated myself for failing to hug in the first place and realized I had already broken the agreement that I was going to carry out of that session a new dedication to not making myself feel stupid. I’m the dog who eats the obedience school certificate of completion and then pees on the rug.

I have made an appointment with the new shrink, but find myself resistant. I am loathe to start all over again. I don’t care for her intake form that is very focused on how much I drink and do I ever think I should stop and how much, really, do I drink? Too much, madam, that is the answer. Who doesn’t question even decisions they are (mostly) okay with? Get out of my head already. I feel like her form is seeking problems and I am not seeking therapy because I drink too much or something like that, I am seeking outside support as I deal with a permanent, un-treatable, degenerative, chronic-pain condition. It’s going to be what it’s going to be, I just need to dump some of it on someone-not-my-spouse.

I wish to be greeted as equal, is what it comes down to.

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My PCP had me get x-rays of my hands, neck and shoulder last week. On Monday his mother (also the office manager and yes, you do see where this is going, don’t you?) called to give me my results. She gave them to my voicemail, and said that everything was “fine.” “It’s fine, Gwen, just fine. Let’s see (crinkling paper sounds) your neck has a little bit of degenerative process and your hands are fine except for some degenerative process–that’s just arthritis, hon–and your shoulder is normal.”

Um.

Do you know how many “Not Okay” wands I break in a single week? I have to hit so many people so many times, I go through them like water. Also, it’s not long enough to reach all the way through the voicemail and the cell tower to find his mother with her diet Coke and smack her nose. I texted him the next day about the veritable not okayness and he said he’s called me.

No, of course he hasn’t. And tonight I have to go to the show, with my aching (yet normal!) shoulder and my aching (but mostly okay!) hands, and my wrists which we’ve never looked at and my ankles that look like I retired from a lucrative pro-football career. Where, after watching a show wherein I spend a huge amount of time feeling bad for the rabbit, I need to try not to tell the audience that the retarded child emperor (with a beard like a Monty Python lumberjack) fired me from his stupid project.

Last Thursday night, three years to the damn day that the child broke his ankle the first time, we got a phone call, set down our wine glasses, collected insurance cards and crutches, and drove quickly to the gym, where the child had attempted a “webster” from a 12 foot high platform, missed his rotation and landed squarely on his ankle. The two teenage girls in charge of the gym that night (srsly, amirite?) were pretty freaked out about the sound it made (POP) and the immediate distortion of his anatomy (ankles don’t typically have weird knobs on the side the size of baseballs) and that it was purple.

As is so very, very typical for healthcare here in our corner of the world (but we don’t have tornadoes or hurricanes or much earthquakes), we arrived at the ER at 8:00 pm, and at 1:00 am someone confirmed that his ankle was broken. But we knew that. The answer(s) to questions like “how bad” were less clear. The ER physician was certain that we would be seen the next day by an orthopedic surgeon. I recount the exchange and subsequent exchanges here:

We got up very early to corral child and head to the appointment, which was with a doctor whose name is Dr. Doctor and I cannot take that shit seriously AT ALL and each time I hear or say it my brain finishes it with, “Can’t you see I’m burning, burning?” Dr. Doctor (can’t you see I’m burning….) himself is like, way over 6′ tall and has the standard kind of odd manner of a surgeon. The upshot, though, is that the child requires surgery to pin the ankle back together. This has been scheduled for Friday afternoon. The child and I returned home and once I had him parked in front of the XBox I set to work cancelling our upcoming vacation.

With great sadness I requested a refund for the sunset, Georgia O’Keefe landscape trail ride at The Ghost Ranch. I contacted the trip insurance company and requested a claim packet for the vacation rental fee. I corresponded with the charming owners of the vacation rental about our shift from paying for our own vacation to helping fund one for the orthopedic surgeon.I cancelled the lovely pet-sitter I had finally found to care for the remaining population here at Casa de Pets Die In the Summer. I did a lot of dramatic sighing. I even called a left a message for my mother-in-law, since the man to whom I am married has not yet even called his parents about their only grandchild’s lower extremity.

I’ve also realized that I do not know the answers to some questions. Will they take the hardware back out when the ankle is healed? Um…I don’t think so? But….Huh. Can he have a spinal instead of general anesthesia? Are you thinking that we will meet the anesthesiologist more than five minutes before they wheel him back to the OR? Because that’s not going to happen. The doctor sent us for a CT scan and the chatty tech (who initially thought the child was a girl, leading me to giggle to him later, “Are they saying to themselves how sorry they feel for that poor girl with the mustache?”) said, “Oh, my. He broke it good–don’t do anything halfway! You taught him well, mom!”

I am not sure if I was being insulted or not. My hair is a perfect shade of citron so maybe.

Meanwhile, the much-anticipated and frequently re-started summer break has finally ground itself to a halt and all hope is lost. Now we are on house arrest, waiting hand and foot on a child who can’t put any weight on his right leg, and who isn’t so much a reader. Buy stock in GameStop, kids.

Forgive me, but What The Fuck? According to the NM Department of Health Medical Cannabis Program there is no enrollment fee. NO ENROLLMENT FEE. Clearly since it’s legal but still not legit, I guess we go through some version of that dirt bag on a skateboard that sold pot at lunch in the high school parking lot, huh?

I have to pay her $100 to talk to her? To fill out a form? And then a further $150-350 based on which box is checked and what letters are stapled to it? So, she does nothing…NOTHING, except that if I’m approved she will give me the secret address of the dispensary.

Despite a slight hangover and a general sense of things not getting better and concern for the future and no meaningful pain relief options on the table, I’m thinking that this pot business just may not be for me.

Back to square one, because as we know, that’s the only square there is. It’s enough to give even a nice girl like me a strong case of the Fuck Its.

I went to my doctor about the weird, gnawing stomach pain thing. He ordered some blood work and an ultrasound of my stomach. A week ago, I had both of those tests done, and both labs said the results would be in my doc’s hands by Tuesday. I waited. I felt very conscious of trying to be “good” and not be the anxious, high-strung patient. I know that is probably stamped all over my chart anyway, yet still I try to preserve my humanity and avoid being pigeon-holed.

I called yesterday morning and asked the harried (and thoroughly incompetent but usually nice) receptionist if my doc had my test results. First, she couldn’t figure out who I was, because I stated my name, which is what I’ve always gone by, Genni. I know this woman. She knows me. She says, “Who?” I say, “Guenevere?” OH, she says, Gwen!

There is no good reason under the sun to try to correct this at this juncture, even though I have never gone by Gwen, some people insist on calling me Gwen and no real amount of polite reminders can help. She also sometimes calls me Genevieve, which makes more sense with Genni but no sense with Gwen.

Gwen! she says, hurriedly, I will have to call you back about that! and hangs up.

I wait. No one calls me back.

I have a fitting for a client scheduled at 8:30 am this morning. Naturally, my doc’s other (incompetent, unable to understand patient confidentiality) assistant calls then. I have to go outside because I work in a concrete building. She says, “He wants you to come in for a follow-up about your labs.”

Has no one in the medical profession ever watched TV? Do they not know the feeling a person gets when they can’t get their results over the phone and have to come in? That means you’ve got cancer, that’s what that means, and that is the way my brain works. Already, I’m starting to feel panicked and shame (because I am panicking, I am always there to kick myself when I’m down), so I take a big risk and say, firmly, “Can he see me today, then?” Oh, no, she says. I go out on a limb and say, “I am not the sort of person who can spend a weekend obsessing, so he either needs to see me or call me.” I imagine her deciding what ink to use on the “High Strung Anxious Sort” stamp for today’s entry into my chart. She tells me to hold on. Then she comes back and says that He says it’s nothing, it’s benign, he just wants to go over it with you. Also, she says, they are “only here until noon today.” I imagine them clinging to their desks, shouting that they have more patients to see as, at exactly noon, a giant vacuum cleaner hose drops from the sky and sucks them all away until Monday.

I consider but do not offer to send him a co-pay and promise to say I had an office visit so his (also incompetent, costing him huge amounts of revenue) insurance people can file a full claim if he will JUST GIVE ME THE RESULTS OVER THE PHONE.

So I have an appointment on Monday. Also, I feel like crying, and like I am stupid and worthless, and like now there will be no end to the anxiety I have already had about this all week. For two days this week I was sure that I looked maybe a little sallow. Maybe my eyes were yellow? Maybe my liver is really damaged from all that shameful, bad alcohol I drink and I will die.

My inner Vulcan told me that if I am “not sure’ if I look sallow, then I do not look sallow, see also: very healthy diet, EDS, IBS, POTS, alcohol the ONLY bad habit, please shut up.

For another two days I decided my thyroid was too big looking and maybe I had a goiter or would have to have it removed or had cancer and would get really fat and lazy on thyroid meds.

The Vulcan asked me to please find something constructive to do with my time and to stop babbling. Also, stop looking in the mirror and stop asking Dr. Google stupid questions.

The literature about EDS often refers to the need for counseling to help sufferers deal with the mistreatment they have often received at the hands of medical providers. It is a known fact that we get the short end of the stick and are typically misunderstood. I have a doc who understands, but he is actually just a nurse practitioner and he is surrounded, like Sleeping Beauty, by thoughtless, incompetent, harried thorns who thwart me at every turn. At every turn, I walk away from interactions feeling like I’ve been given a wedgie and a dunce hat. I feel stupid and afraid.

It’s the most familiar dance I know, and I am a permanent guest at the party.

My physician asked me that today as we tried to sort through the current batch of health related issues.

I said, Well, I think it’s the insomnia, but…that’s influenced by the anxiety, and the heart rate stuff probably adds to those…and since I’ve given up on anything to help the chronic pain, I do really need to sleep in order to deal with that….trailing off, I finally said, “I don’t know.”

I had gone to see him a month ago because I was waking up at night, at around 2:00 or 3:00 am, with my heart pounding, sweating, and unable to go back to sleep. As usual, I had researched this on the Ehlers Danlos Foundation message boards. The complicating factor of P.O.T.S. made it all that much more interesting. Was it due to POTS? Or maybe perimenopause (I’m 44, after all)? What was causing which? Which was causing what? Furthermore, when I went to see him, my blood pressure was really high, and normally I have really low blood pressure. Really low, like 90/60. I was cooking along at 130/100 or something unnerving like that. My heart rate was also high, which happens to me often. I had experienced two migraines in the course of 3 months (most unwelcome, I would add), after an 8 year hiatus.

After some debate, he decided to try Amytriptilyne to help me sleep, prevent migraines and possibly even help with the general anxiety. He advised I start with 50 mg and then go up to 100, then 150. On the plus side, it helped me fall asleep and I have been able to discontinue a 17 year affair with Benadryl, and cut back on my nighttime alcohol consumption. Downside, my heart rate remained too high. I have an app on my phone (“The shit you say!” “No, I say, it’s amazing!”) to track my pulse, which is consistently between 100 and 120. When I went up to 100 mg of it, my pulse went up to 147, so I dropped back to 50 immediately. At that time we talked beta blockers but he was concerned I’d drop to where I’d end up in the ER due to fainting and dizziness.

Today, when I went back, my BP was more like my normal; 102/65, and I’ve had a few dizzy spells. My heart was continuing to race along like the Kentucky Derby, and therein was the problem. Go off the Amitriptilyne, he said. Slowly. Take a Xanex at night, instead, and go see the Cardiologist. “FML!”, I said, “The cardiologist declared me uninteresting but slender and attractive last time.” Well, my PCP countered, he might find you more interesting this time. “But am I still attractive?” I asked, sarcastically. He declined to answer (I should note that my PCP is a friend and the husband of a dear friend, so I can get away with having a personality).

The cardiologist’s office is near my PCP’s office, so I walked my referral on over. This office smells like my Grama’s bathroom used to smell, and I am not saying that in a complimentary fashion. My previous experience involved waiting for over and hour just to be told of my slender figure and uninteresting heart. I approach with strong resistance and low expectations. They can see me on February 28th, and I already know that I’ll land with high blood pressure and heart rate simply due to my general attitude. He’ll probably label me an angry feminist and withdraw his affections. Maybe he’ll also have something of meaning to offer, I don’t know. I rather expect to be punished with a Holter Monitor, and possibly a tilt test. Or, given this guy’s general attitude, maybe he’ll scorn my fancy diagnosis from my fancy geneticist and tell me I am simply a hysterical woman.

I’ve never, ever heard that from a male physician before.

Maybe *that’s* the main problem. Being dismissed due to gender and rarity of diagnosis.

I posted the final version of this piece on Facebook. One of my New Year’s resolutions is to start to market myself and my work a bit more aggressively than I had in years past (see: not at all). Someone with whom I am slightly acquainted–our connection to one another arose from my best friend’s murder–commented that she really liked the butterflies. With help from another friend, she was gently corrected that, no, they are moths. Oh well, she said, I will interpret them as butterflies, even though I guess I can see how they might resemble moths.

One of the hardest things for me as an artist is dealing with how people view my work. As a kid, I doodled faces all the time, and others were always asking, “Who are your drawing?” No one, I would mutter, curving my arms around my subject matter protectively. It was seemingly very, very important that I identify who the picture was of, and that made me even more resistant to letting people see my work, particularly when it was unfinished. In college, I took a fair amount of Art History classes, finding the analysis of paintings to be fascinating, and that put me on the other side of the canvas, so to speak. Instead of making it, I was viewing it, and I assigned information to what I viewed based on perceptions shaped by education in the subject. I wondered what the artists would say about criticism and interpretation of their work by people who were born hundreds of years after the works were created.

So, on one side of the table, there’s the artist creating their work, and on the other side there are educated viewers applying theoretical criticism. There’s another sliver on the table, though. People who are ignorant and think that interpretation of a work is open to any viewpoint. The piece features numerous moths, not butterflies. I researched moths, not butterflies. It is a driving point–the piece is not dealing with re-birth (commonly associated with butterflies). My acquaintance who insists she sees butterflies is making an argument that might pair well with an insistence that the sky is actually pink. It is so far off the mark that it is inarguable.

Further engagement with this person would be fruitless; it is a version of the Emperor’s New Clothes, except that it might stop before the child in the crowd pulls the scales from everyone’s eyes. Privately I wonder if this person is aware of how uninformed they sound, or if their opinion is something so exalted that quality is not a factor. I am also reminded of something my father often warned me about. He would say that the most dangerous person in the world is one of moderate intelligence, who knows just enough to know that they are not intellectually superior. That person, my father would say, will fight to the death to preserve the false image that they are more intelligent than they really are.